old posts aug 10 thru aug 18

• Thursday, August 18, 2011 5:32 PM, MST

  written by Kassie Bonura

  scope tomorrow

  they are doing the scope tomorrow at noon. Praying for an easy fix. If all goes well we will be out saturday!

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• Thursday, August 18, 2011 11:04 AM, MST

  written by Kassie Bonura
  So what an exciting weekend. An ENT (ear nose and throat doc) came in looked up her nose and said the bleeding was coming from the tip of her nose and all we had to do was pinch it shut harder. We tried to get him to explain then why did it drain down her throat if it was in the tip and we had her leaned forward, he said it wouldn’t that it probably drained down when she was laying down........well sir she was never laying down. I absolutely believe in letting the professionals do their jobs, but they need to listen and answer our questions. So the intensivest doctor was with him and wanted to test her H & H which is hemoglobin and hematocrit, we did that, it dipped about 20% but no emergent need to get a transfusion. That is slowly getting back to normal. He wanted to send us home. We said we need to fix this because the nose bleeds are horrible and if this happened at school or church, children would be emotionally scarred and Haley would get a terrifying reaction from people not used to seeing this. Also the fact that it is completely unhealthy to lose that much blood. I see people even here when i tell them about the bleeding look at me like oh its not that bad. Until they see it and yes it is that bad. So we argued, very nicely with the doctors last night, the ENT said all they could do was send us home and if it happens again we would come back and they would pack it....so another $150 er co pay....when we can just look and fix it now. That was the first time here that we didnt love the doctors that we have had. So the cardiologist came in, we'd never met before but our first cardiologist here said he was great and already knew about haley. He came in and was great! We voiced our concerns and he chatted with the other two. He helped to get us another chance to be looked at. Long story short some people didnt want to do what we needed until other people got involved, we were even complimented on being good advocates for Haley!! And it is great to see a doc walk in that we know personally and the attitudes and plans change just like that, without warning or discussion.
  
  
  They kept telling us 99% of the time the bleeding is in the front and its very rare that it be any where else. I am sorry but stop telling me we are not going to check because it is rare. Really? Then tell us how rare it is to have a 5 year old with 2 large unrepaired VSD's, a PDA and pulmonary arterial hypertension. Such a simple test could avoid life changing problems.
  
  
  So the ENT we saw yesterday was unavailable today so we saw another. He came in listened to our history and looked at haley and said we absolutely have to go in and fix this. He told us it was rare to have bleeding from the back but based on our experience it sounds like it is in the back. He said we need to plan to use the OR, put her under and fix this! WooHoo!! He did tell the intesiveist that this defiantly needed to be fixed before we are sent home. We should get this done today, observed over night and then home tomorrow! Oh and he told the doc had we known about this earlier we would have fixed it then......oh like last week, before we left, when we were saying we will be back next week because of a nose bleed....you mean if we knew then?...Sorry...venting.
  
  
  Haley is doing well, she had the massive bleed that brought us here, one yesterday that lasted right at an hour (even using the pinching technique we were shown...) and then 3 more each about 30 to 45 min. those were small in comparison, still impressed the nurses. Haley is an unbelievably strong kid! Going through things most kids or adults will ever have to. AND she does most of it with a great attitude. She misses school and sunday school, and ashley. But I am glad we are here and getting these things taken care of. And I am so thankful Nick and I are on the same page with everything. It has been a ride, we decided before we got too deep into this that we were going to make it as good of an experience as we could, we have so far. I would say we are knee deep right now, with a goal to come out of this no more than chin deep.
  
  
  
  

• Wednesday, August 17, 2011 7:26 AM, MST

  written by Kassie Bonura

  oh hospitsl sweet hospital

  Goodmorning! Well we had a great long weekend at home, that included school and work, ashley and family dinners, not to mention my birthday. It was great. Meds going well, complaints of an upset tummy come most days before dinner. She woke up one morning, to discover she had slept through, what we would consider, a small nose bleed. We got cleaned up and made sure to use her nose spray often that day. With the oxygen and arizona it can get quite dry.
  Yesterday we had the first post hospital cardiology appt. That went well, as expected no big changes, she still sports her cough and murmur. Her doctor helped us through some loose ends from our stay at PCH. We got her to school late, then I had to interupt again because I had gotten all the way home and realized I had forgotten to give her her meds! The school and her teacher have just been so great, understanding and helpful through this.
  Last night while getting ready for bed, a trickle of blood came as the start of a massive 2hr nose bleed, she threw up very large amounts of blood twice. It was worse then the one we had in the hospital. So to the ER we went, bloody nose and vomitting all the way, we drove very fast with the hazzards on, most people got out of the way but there is always a few that feel like they shouldnt have to, which actually makes it more dangerous then just moving. Not saying speeding is a good idea but when you see your baby going through this, her lips white, and wanting to pass out, we did what we had to. Angels were definatly speeding with us. We passed everyone in the er line and were admitted. So here we are once again awaiting blood tests and an echo. Hopefully we will be out soon!

 

 

Friday, August 12, 2011 6:38 AM, MST

written by Kassie Bonura

Wow.... I knew and understood we are asking for a miracle, but it really hit me last night when I actually saw the word incurable.......we may not find a cure but we can definately, God willing, pray and hope for a miraculous healing!

So last night on our way home haley asked me why the nurses didnt draw her blood, I said they did, haley in all her brillent innocence said they said they were going to draw my blood so why dont I have any pictures? So there is the teaching oppertunity many words have more then one meaning. Haha 

 

Thursday, August 11, 2011 9:39 PM, MST

written by Kassie Bonura

We are home!

So we did not make school pictures, but haleys teacher said she would take a picture of the class with haley so we will have one! We didnt get discharged until 6pm, it was all trying to get her meds and oxygen lined up so that we didnt go home and not have everything we need. The oxygen tank got dropped off today, the more she is on oxygen the better but the doctor said she didnt have to have it on at school. Its weird, but it feels perfectly normal that right now I have 4 mini tanks and a miniture tank walker sitting in my livingroom, not to mention the four foot tank in the hall. Oh my, all is well. We are so glad to be home. And haley will be back at school tomorrow and church on sunday. I will probably not update daily, but I will be updating. The next two months are going to be extremely stressful. We are taking it day by day, week by week no more then that at a time though. Feel free to ask how haley is doing, but be open to the possiblity that we need to talk about anything other then the situation. Although I do love talking about my girls, this can be a bit overwhelming. Also haley would love to tell people about the hospital and everything, when shes ready. It has been a long week, thank you all for your support! 

 

Wednesday, August 10, 2011 9:14 PM, MST

written by Kassie Bonura

any other twists coming...

My sister and her family left today. I am so thankful they were able to come down, I am thankful that this took the road it did because Haley and the cousins got to see each other and hang out more then if the surgery had gone as planned. Just having my sis near during all this was such a blessing. Even though she will not be here when haley has open heart surgery, it is ok. If we get to surgery it will be such a welcome event. It is strange when you go from praying there is nothing wrong with her heart, to praying  to get to open heart surgery.
so another twist in the adventures of haley. As of now we are headed home tomorrow. Which is awesome and terrifying at the same time. The doctor said it takes a long time to get insurence to accept paying for these meds she is on, so one reason we were going to stay a bit longer was to hurry up getting them accepted, insurence either pays for the meds or the hospital stay. Ok so this normally takes at least a week. Well it took only 6 hours! They are both accepted and ready to go, as well as the oxygen!!! So He said what we do now is wait, it is going to take at least 2 months on meds to see any results we can count on. We could stay for more observation but it would only be for mine and nicks peace of mind, well Haley's kindergarten school pictures are tomorrow, and I am so excited, God willing, She will be there! So we decided to go ahead and head home, still a bit nervous but the doctor, who we trust 110% said he feels comfortable sending us home and would do it himself if he were in our situation. It is really important to us to have her be in the class picture, for one its her kindergarten picture, also if the meds dont work......its an importanat milestone.
So we will be seeing the cardiologists in his office on monday, we will have multiple appts, for echocardiograms and things, then in 2 months we will hopefully be in for another catheter test. Praying the meds work!
I am so excited haley will be back to school and sunday school! I know her classes have been missing her.  It is going to be strange and difficult to try and get back to life normal, after knowing how "sick" haleys insides really are. It will be so much better to be home with ashley and back to what we know. Even though i do have to say, this stay at PCH has been quite an adventure, a very good positive amazing, scary (at times) adventure. The doctor, nurses, child life, cafeteria people, techs, basically any one with the PCH name tag has been so caring and helpful. I just want to give props where props are   due. We will see them all again real soon!